Frustration

I am not sure what to think when your most favorite doctors and NP's say "We just don't know. Kinzie is a mystery," and "Kinzie, you sure make me feel that I'm not very smart." I'm so frustrated I could scream! I keep thinking "Ok, this makes sense. All the symptoms point to this. The test should come back positive." And then, it comes back negative or something totally random and different comes back positive, like the UTI.

The PH Probe test came back today and showed that her "episodes" do not correlate to reflux. The test did show that she has some reflux but not the severe reflux that we have felt to be the one constant in all of this mess. So, you know as much as we do. We are now back to ground zero, well, more like ground 1 or 2 since we do have some positives like:

1. Decrease in desat episodes and none all weekend.

2. She can manage her secretions and reflux and keep from throwing up most of the time.

3. Seems to be feeling better today after time on the anti-biotic.

4. Ate much better today, 3 full feeds out of 4 on the day shift.

5. Manages own temperature.

We are currently working on getting wet diapers. She's never had a problem with this but even now after being on the meds all weekend she is still having low urine output. She has always been a little heat rock and sweats like crazy so we have now brought in the Nephtology (sp?) doctors that check the kidneys. They seems to think that the kidneys are fine and that her low urine output is due to her getting rid of water other ways: sweat, spit, breathing. But then how do you explain great urine output with the same sweating for the first 5 weeks as opposed to this 1 last week. You guessed it...more testing.

To be continued...